Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe

Autores
Daveson, Barbara A.; Alonso, Juan Pedro; Calanzani, Natalia; Ramsenthaler, Christina; Gysels, Marjolein; Antunes, Barbara; Moens, Katrien; Groeneveld, Esther I.; Albers,Gwenda; Finetti, Silvia; Pettenati, Francesca; Bausewein, Claudia; Higginson, Irene J.; Harding, Richard; Deliens, Luc; Toscani, Franco; Ferreira, Pedro L.; Ceulemans, Lucas; Gomes, Barbara
Año de publicación
2014
Idioma
inglés
Tipo de recurso
artículo
Estado
versión publicada
Descripción
BACKGROUND: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. METHODS: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. CONCLUSIONS: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.
Fil: Daveson, Barbara A.. King’s College London; Reino Unido
Fil: Alonso, Juan Pedro. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Universidad de Buenos Aires; Argentina
Fil: Calanzani, Natalia. Universidad de Buenos Aires. Facultad de Ciencias Sociales. Instituto de Investigaciones ; Argentina
Fil: Ramsenthaler, Christina. King’s College London; Reino Unido
Fil: Gysels, Marjolein. Universitat Autònoma de Barcelona; España
Fil: Antunes, Barbara. King’s College London; Reino Unido
Fil: Moens, Katrien. King’s College London; Reino Unido
Fil: Groeneveld, Esther I.. King’s College London; Reino Unido
Fil: Albers,Gwenda. VU University Medical Center; Países Bajos
Fil: Finetti, Silvia. Fondazione Lino Maestroni. Istituto di Ricerca in Medicina Palliativa; Italia
Fil: Pettenati, Francesca. Fondazione Lino Maestroni. Istituto di Ricerca in Medicina Palliativa; Italia
Fil: Bausewein, Claudia. King’s College London; Reino Unido. Munich University Hospital; Alemania
Fil: Higginson, Irene J.. King’s College London; Reino Unido
Fil: Harding, Richard. King’s College London; Reino Unido
Fil: Deliens, Luc. Vrije Unviversiteit Brussel; Bélgica. University of Ghent; Bélgica
Fil: Toscani, Franco. Fondazione Lino Maestroni. Istituto di Ricerca in Medicina Palliativa; Italia
Fil: Ferreira, Pedro L.. Universidad de Coimbra; Portugal
Fil: Ceulemans, Lucas. Universiteit Antwerpen; Bélgica
Fil: Gomes, Barbara. King’s College London; Reino Unido
Materia
Europe
Palliative
Public Opinion
Health Policy
Nivel de accesibilidad
acceso abierto
Condiciones de uso
https://creativecommons.org/licenses/by-nc-sa/2.5/ar/
Repositorio
CONICET Digital (CONICET)
Institución
Consejo Nacional de Investigaciones Científicas y Técnicas
OAI Identificador
oai:ri.conicet.gov.ar:11336/33755
Acceder
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repository_id_str 3498
network_name_str CONICET Digital (CONICET)
spelling Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in EuropeDaveson, Barbara A.Alonso, Juan PedroCalanzani, NataliaRamsenthaler, ChristinaGysels, MarjoleinAntunes, BarbaraMoens, KatrienGroeneveld, Esther I.Albers,GwendaFinetti, SilviaPettenati, FrancescaBausewein, ClaudiaHigginson, Irene J.Harding, RichardDeliens, LucToscani, FrancoFerreira, Pedro L.Ceulemans, LucasGomes, BarbaraEuropePalliativePublic OpinionHealth Policyhttps://purl.org/becyt/ford/3.3https://purl.org/becyt/ford/3https://purl.org/becyt/ford/3.3https://purl.org/becyt/ford/3BACKGROUND: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. METHODS: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. CONCLUSIONS: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.Fil: Daveson, Barbara A.. King’s College London; Reino UnidoFil: Alonso, Juan Pedro. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Universidad de Buenos Aires; ArgentinaFil: Calanzani, Natalia. Universidad de Buenos Aires. Facultad de Ciencias Sociales. Instituto de Investigaciones ; ArgentinaFil: Ramsenthaler, Christina. King’s College London; Reino UnidoFil: Gysels, Marjolein. Universitat Autònoma de Barcelona; EspañaFil: Antunes, Barbara. King’s College London; Reino UnidoFil: Moens, Katrien. King’s College London; Reino UnidoFil: Groeneveld, Esther I.. King’s College London; Reino UnidoFil: Albers,Gwenda. VU University Medical Center; Países BajosFil: Finetti, Silvia. Fondazione Lino Maestroni. Istituto di Ricerca in Medicina Palliativa; ItaliaFil: Pettenati, Francesca. Fondazione Lino Maestroni. Istituto di Ricerca in Medicina Palliativa; ItaliaFil: Bausewein, Claudia. King’s College London; Reino Unido. Munich University Hospital; AlemaniaFil: Higginson, Irene J.. King’s College London; Reino UnidoFil: Harding, Richard. King’s College London; Reino UnidoFil: Deliens, Luc. Vrije Unviversiteit Brussel; Bélgica. University of Ghent; BélgicaFil: Toscani, Franco. Fondazione Lino Maestroni. Istituto di Ricerca in Medicina Palliativa; ItaliaFil: Ferreira, Pedro L.. Universidad de Coimbra; PortugalFil: Ceulemans, Lucas. Universiteit Antwerpen; BélgicaFil: Gomes, Barbara. King’s College London; Reino UnidoOxford University Press2014-06info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttp://purl.org/coar/resource_type/c_6501info:ar-repo/semantics/articuloapplication/pdfapplication/pdfhttp://hdl.handle.net/11336/33755Daveson, Barbara A.; Alonso, Juan Pedro; Calanzani, Natalia; Ramsenthaler, Christina; Gysels, Marjolein; et al.; Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe; Oxford University Press; European Journal Of Public Health; 24; 3; 6-2014; 521-5271101-1262CONICET DigitalCONICETenginfo:eu-repo/semantics/altIdentifier/url/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4032478/info:eu-repo/semantics/altIdentifier/doi/10.1093/eurpub/ckt029info:eu-repo/semantics/altIdentifier/url/https://academic.oup.com/eurpub/article/24/3/521/473239info:eu-repo/semantics/openAccesshttps://creativecommons.org/licenses/by-nc-sa/2.5/ar/reponame:CONICET Digital (CONICET)instname:Consejo Nacional de Investigaciones Científicas y Técnicas2025-09-10T13:10:59Zoai:ri.conicet.gov.ar:11336/33755instacron:CONICETInstitucionalhttp://ri.conicet.gov.ar/Organismo científico-tecnológicoNo correspondehttp://ri.conicet.gov.ar/oai/requestdasensio@conicet.gov.ar; lcarlino@conicet.gov.arArgentinaNo correspondeNo correspondeNo correspondeopendoar:34982025-09-10 13:10:59.75CONICET Digital (CONICET) - Consejo Nacional de Investigaciones Científicas y Técnicasfalse
dc.title.none.fl_str_mv Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe
title Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe
spellingShingle Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe
Daveson, Barbara A.
Europe
Palliative
Public Opinion
Health Policy
title_short Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe
title_full Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe
title_fullStr Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe
title_full_unstemmed Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe
title_sort Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe
dc.creator.none.fl_str_mv Daveson, Barbara A.
Alonso, Juan Pedro
Calanzani, Natalia
Ramsenthaler, Christina
Gysels, Marjolein
Antunes, Barbara
Moens, Katrien
Groeneveld, Esther I.
Albers,Gwenda
Finetti, Silvia
Pettenati, Francesca
Bausewein, Claudia
Higginson, Irene J.
Harding, Richard
Deliens, Luc
Toscani, Franco
Ferreira, Pedro L.
Ceulemans, Lucas
Gomes, Barbara
author Daveson, Barbara A.
author_facet Daveson, Barbara A.
Alonso, Juan Pedro
Calanzani, Natalia
Ramsenthaler, Christina
Gysels, Marjolein
Antunes, Barbara
Moens, Katrien
Groeneveld, Esther I.
Albers,Gwenda
Finetti, Silvia
Pettenati, Francesca
Bausewein, Claudia
Higginson, Irene J.
Harding, Richard
Deliens, Luc
Toscani, Franco
Ferreira, Pedro L.
Ceulemans, Lucas
Gomes, Barbara
author_role author
author2 Alonso, Juan Pedro
Calanzani, Natalia
Ramsenthaler, Christina
Gysels, Marjolein
Antunes, Barbara
Moens, Katrien
Groeneveld, Esther I.
Albers,Gwenda
Finetti, Silvia
Pettenati, Francesca
Bausewein, Claudia
Higginson, Irene J.
Harding, Richard
Deliens, Luc
Toscani, Franco
Ferreira, Pedro L.
Ceulemans, Lucas
Gomes, Barbara
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv Europe
Palliative
Public Opinion
Health Policy
topic Europe
Palliative
Public Opinion
Health Policy
purl_subject.fl_str_mv https://purl.org/becyt/ford/3.3
https://purl.org/becyt/ford/3
https://purl.org/becyt/ford/3.3
https://purl.org/becyt/ford/3
dc.description.none.fl_txt_mv BACKGROUND: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. METHODS: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. CONCLUSIONS: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.
Fil: Daveson, Barbara A.. King’s College London; Reino Unido
Fil: Alonso, Juan Pedro. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Universidad de Buenos Aires; Argentina
Fil: Calanzani, Natalia. Universidad de Buenos Aires. Facultad de Ciencias Sociales. Instituto de Investigaciones ; Argentina
Fil: Ramsenthaler, Christina. King’s College London; Reino Unido
Fil: Gysels, Marjolein. Universitat Autònoma de Barcelona; España
Fil: Antunes, Barbara. King’s College London; Reino Unido
Fil: Moens, Katrien. King’s College London; Reino Unido
Fil: Groeneveld, Esther I.. King’s College London; Reino Unido
Fil: Albers,Gwenda. VU University Medical Center; Países Bajos
Fil: Finetti, Silvia. Fondazione Lino Maestroni. Istituto di Ricerca in Medicina Palliativa; Italia
Fil: Pettenati, Francesca. Fondazione Lino Maestroni. Istituto di Ricerca in Medicina Palliativa; Italia
Fil: Bausewein, Claudia. King’s College London; Reino Unido. Munich University Hospital; Alemania
Fil: Higginson, Irene J.. King’s College London; Reino Unido
Fil: Harding, Richard. King’s College London; Reino Unido
Fil: Deliens, Luc. Vrije Unviversiteit Brussel; Bélgica. University of Ghent; Bélgica
Fil: Toscani, Franco. Fondazione Lino Maestroni. Istituto di Ricerca in Medicina Palliativa; Italia
Fil: Ferreira, Pedro L.. Universidad de Coimbra; Portugal
Fil: Ceulemans, Lucas. Universiteit Antwerpen; Bélgica
Fil: Gomes, Barbara. King’s College London; Reino Unido
description BACKGROUND: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. METHODS: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. CONCLUSIONS: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.
publishDate 2014
dc.date.none.fl_str_mv 2014-06
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
http://purl.org/coar/resource_type/c_6501
info:ar-repo/semantics/articulo
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv http://hdl.handle.net/11336/33755
Daveson, Barbara A.; Alonso, Juan Pedro; Calanzani, Natalia; Ramsenthaler, Christina; Gysels, Marjolein; et al.; Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe; Oxford University Press; European Journal Of Public Health; 24; 3; 6-2014; 521-527
1101-1262
CONICET Digital
CONICET
url http://hdl.handle.net/11336/33755
identifier_str_mv Daveson, Barbara A.; Alonso, Juan Pedro; Calanzani, Natalia; Ramsenthaler, Christina; Gysels, Marjolein; et al.; Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe; Oxford University Press; European Journal Of Public Health; 24; 3; 6-2014; 521-527
1101-1262
CONICET Digital
CONICET
dc.language.none.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv info:eu-repo/semantics/altIdentifier/url/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4032478/
info:eu-repo/semantics/altIdentifier/doi/10.1093/eurpub/ckt029
info:eu-repo/semantics/altIdentifier/url/https://academic.oup.com/eurpub/article/24/3/521/473239
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
https://creativecommons.org/licenses/by-nc-sa/2.5/ar/
eu_rights_str_mv openAccess
rights_invalid_str_mv https://creativecommons.org/licenses/by-nc-sa/2.5/ar/
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Oxford University Press
publisher.none.fl_str_mv Oxford University Press
dc.source.none.fl_str_mv reponame:CONICET Digital (CONICET)
instname:Consejo Nacional de Investigaciones Científicas y Técnicas
reponame_str CONICET Digital (CONICET)
collection CONICET Digital (CONICET)
instname_str Consejo Nacional de Investigaciones Científicas y Técnicas
repository.name.fl_str_mv CONICET Digital (CONICET) - Consejo Nacional de Investigaciones Científicas y Técnicas
repository.mail.fl_str_mv dasensio@conicet.gov.ar; lcarlino@conicet.gov.ar
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